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Is my ‘remission’ acceptable?

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Crohn's Disease
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Posted 8/19/2019 11:37 AM (GMT -5)
Hello,

I’ve had Crohn’s disease 13 years although was not diagnosed for all that time.
I have had a perforated bowel and abscess that required an open resection which all went well and no complications since. This was almost 8 years ago.
Over the last three years I have been on 50mg of azathioprine (the only medication I have ever been on for Crohn’s, largely due to being in the UK I expect).
My lab results are always decent - my fecal calrproctectin was 30 in December 2018 and 60 in March 2019. My blood results are normal. My colonoscopy in April 2017 was good, only about three very tiny superficial ulcers and MRI with contrast was normal.

Yet every few months I get symptoms. I get sharp pain in the lower ileum and symptoms very much like a blockage. It always passes after a few days or a week. I guess I can put up with this as feel well the rest of the time. But any time I get these symptoms it frightens me. What if worse things are going on then I imagine? What if I wake up one morning with a perforation and sepsis?

What do people think? The anti TNFs are out of the question due to past optic neuritis and based on my labs at the moment I don’t think I could be approved of any change to my medication.
Posted 8/19/2019 7:09 PM (GMT -5)
To answer your question straight away. I think your current state of remission is quite acceptable indeed. As far as getting pain every few months, since you describe it as something that might resemble a blockage, that would be my first inclination. You might have some mild narrowing that certain foods cause a problem with. You might suggest that your GI arrange for an MRE. This is the least invasive test, that would show any scarring you've formed. In the meantime, maybe you should stay totally away from the typical avoidance foods. No corn, seeds, nuts etc. Hope you continue to do well, and get this issue under control as well.
Posted 8/19/2019 8:20 PM (GMT -5)
50mg/day of azathioprine is a low dose, probably too low to be effective. Why such a low dose? Typical dosing is 2.5mg/kg of body mass, roughly speaking.

Fecal calpro is a pretty reliable marker for inflammation in the colon, but it isn't quite so reliable for inflammation in the small bowel.

Where in your GI tract was your resection? Colon? Small bowel? Terminal ileum?

Did you start having these episodes shortly after the surgery 8 years ago, or are these something newer and more recent?

When was your MRI with contrast done?
Posted 8/20/2019 2:01 AM (GMT -5)
Hi thanks for your replies.

I am on 50mg as 75mg caused my WBC to drop. My weight is 51kg and I’m 164cm.

After my surgery I felt FANTASTIC for about 2-3 years and I was on no meds during that time as I was misdiagnosed. I started to get symptoms and was re-evaluated and found to have Crohn’s after all. My resection was the terminal ileum and they removed my appendix. After a couple of years after no symptoms whatsoever post-resection I started getting symptoms all the time and got rescoped in 2016 and was found to have inflammation, ulcers and my small bowel looked “withered”. A year later on azathioprine I was rescoped and there was much improvement with only 3 tiny superficial ulcers. However while my symptoms have massively improved since 2016, I still get these symptoms now and again and they frighten me. I’m so scared of another perforation.
Posted 8/20/2019 4:07 PM (GMT -5)
If you couldn't go higher than 50mg of azathioprine due to it causing a decrease in WBC, then it's probably not an appropriate medication for you. Something else should be considered.

When was your last small bowel MRI?
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